L'Shana Tova!

Blushing Baked Salmon, Tzimmes, Green Beans

On Wednesday evening, Jeannine joined me and Mom for Rosh Hashanah dinner. She loves coming over for all of the Jewish holidays (and for all of Mom's good cooking!). We enjoyed the super yummy food and kept the conversation light and fluffy. 

Tzimmes

Tzimmes is one of my top favorite Jewish foods--a combination of sweet potatoes, carrots, prunes, dates, dried apricots, cinnamon and honey. Foods are sweetened with honey to represent the desire for a sweet new year.

Mom even transformed an apple cake recipe into a gluten-free version. It was so good none of us felt we were eating a gluten-free food.

A-Mazing Apple Cake

The combination of Fall weather, shorter days, Rosh Hashanah, Yom Kippur, my birthday and anniversaries of starting/stopping major new medical treatments always leave me in deep state of introspection and contemplation. Yom Kippur consists of 10 days during which we evaluate our lives. 

I'm always doing a lot of this anyways, but this year I've chosen to use this month full of so many spiritual, emotional and physical events to drastically limit my time on Facebook (checking once a week instead of a zillion times a day) and email (checking 1-2 times a day at most instead of a zillion times a day and not at all while we are out of town). This practice feels deeply spiritual. Instead of bookending my day with email and FB and filling any quiet time with these things, I'm challenged to sit quietly with my discomforts, my thoughts, and God. I'm challenged not to check email or FB every time I feel a twinge of loneliness or boredom. I'm challenged not to reach for my Smartphone every few minutes to see if there is any new mail. I'm challenged to start and end my day quietly and mindfully. I'm challenged to use my time more mindfully and to make my communications more meaningful.

While listening to the editor of The New Yorker on NPR on the 10th anniversary of September 11th, I heard him discuss how noisy and busy our world has become. He emphasized the importance of taking opportunities to think deeply and to be quiet. I've never truly taken a deliberate time out from being uber-connected to the world around me. Taking a time out on my terms feels empowering (and scary). While I find myself wanting to check email right away when I wake up in the morning or wanting to email my friend K the latest happenings in my day, I find the discipline it takes not to do these things leaves me feeling more in control of my day and my life. Old habits die hard, and I am definitely addicted to email and FB!

I've been feeling like my plate is full and also cracking, ready to break. By taking one big thing off it, I hope I can make more time for renewal, introspection, atonement, and finding balance as the new year begins. I'm grateful for the opportunities that the Fall holidays, my birthday, and the changing weather bring for renewal, introspection, and quiet.

Mom: Queen of the Kitchen

The most joyful part of the holiday was seeing Mom in the kitchen feeling well enough to enjoy cooking again. The surgeries reduced her pain by about 90-95%. She still has some neuropathy in her foot, numbness and tingling in her arm, and sciatic pain, but she is otherwise doing extremely well. As I watched her work in the kitchen much of the day, I felt overwhelmed with gratitude and joy in seeing that Mom is back to her old self! The strained look from pain and fatigue is gone. This is the first time since hurting her back and the heart attack that she truly enjoyed making a holiday meal and didn't have to struggle through so much pain. She didn't even complain about having to wash all of the dishes by hand because our dishwasher is broken! She is one good sport.

Blessings for a Sweet New Year,

Emily 

What's In A Day?

Sunflower with Rain and Bug in our Yard

I'm often asked: "What do you do all day?", "How do you keep busy?", "What does a day look like for you?".  Here is a sample of a day in my life with chronic illness. This post focuses on what I 'do' in a day, rather than how I 'feel' symptom-wise when I'm, say, walking to the mailbox.


Each day I carefully weigh my decisions.What needs to get done? What would bring me joy? Am I willing to pay the price physically if I push through to blog? Do I have time to go on an outing in spite of all of the medical things going on? Is it worth it to push through an outing? The extreme limits placed on my days leaves me making concession after concession. My symptoms, as much as I rail against them, often rule the day.

Sunflower Getting Ready to Open

12:45 AM--Lights out. Hope to fall asleep quickly and easily.


6 AM--Wake up to pee. Have dizzy spell and can't fall back to sleep. Turn on NPR Morning Edition to listen to until I fall back to sleep. Shake Asher's treat jar so he will jump up on the bed and keep me company.


8 AM--Alarm goes off. Wake up to take Cortef and DHEA. Get up to pee. Again.


10 AM--Wake up to pee again.


11 AM--Alarm goes off. Take the meds that I need to be able to get out of bed, most importantly midodrine, which raises my blood pressure. Get up to pee. Again. Asher, who is waiting outside my bedroom door, comes into the bedroom with me, gets up on the bed and cuddles with me while I wait for my meds to kick in and say my morning prayers.


11:30 AM--Alarm goes off again. Time to get up. I need to get up slowly, so I turn on the TV and watch a few minutes of The Martha Stewart show while tilting my bed upward a bit and eventually sitting up. I check the weather, pick out clothes to wear if I haven't done so the night before, and get dressed. At this time I put on my compression hose and girdle which also help to raise blood pressure.


11:55 AM--Go into bathroom to wash face, comb hair, spritz it with water and, if I feel up to it, put some product in it and scrunch it a bit. Put on some blush so I don't have to look at my pale face! 

Love the Rain on the Sunflowers

NOON--Head into kitchen. Mom has either left me an easy lunch to prepare or she is here to help me prepare lunch.  Eat lunch while either visiting with Mom or looking through a bit of the local newspaper. Mom often marks or highlights the funniest comics, a good horoscope, and stories that I might find interesting since I don't feel well enough to read much of the paper. Finish feeding Asher his breakfast.


12:05 PM--Alarm goes off again reminding me to take another dose of Cortef.


12:40 PM--Take after lunch meds and supplements. Take stock of how I am feeling and what I might be able to do with my day. 


12:45 PM--Brush teeth. Pee again. 

Our First Year Growing Sunflowers Thanks to My Friend Alia

1:00 PM - 3:00 PM -- These are the two hours each day during which I am most able to do things such as try and work on a blog, make medical calls, go on an outing to the Farmer's market, go for a StRoll with mom, have a friend over for a visit, go to a doctor's appointment, etc. What I'm able to do during these two hours varies a lot. Most difficult are days that I need to rest all afternoon. I usually need to choose one big thing (i.e. an outing or a blog) or one or two small things to work on (an email or a medical call). This is typically my 'best' part of the day excepting the angst I always feel over how to spend the time. The following is a sample of an afternoon that is 'good' in the sense that I was able to work on a blog, but difficult because focusing and concentrating are such a huge struggle and I paid a big price for pushing through my symptoms.


1:15 PM--settle into the recliner in my study to blog. Was delayed by an upset stomach. Start this blog post.


2:00 PM--Having trouble concentrating. Have to pee. Take a little break. Go to mailbox. Open 'good' mail--a Rosh Hashanah card! Check in on Mom's yummy cooking for the holiday. Walk around the house inside a couple of times.


2:20 PM--Settle back in at computer in study. Asher settles in too. :) 


2:30 PM--Alarm. Time to take midodrine. 


2:45 PM-- Can no longer focus on blogging. Take a break to import a couple of CDs. Return phone call to Dr. Complex.


3:10 PM--head into kitchen for a snack. Am too sick and tired to do anymore. Give Mom her Rosh Hashanah card. Hang out with FuzzFace.

Getting Ready to Bloom

3:45 PM--Take final dose of Cortef. Get ready for a nap in the recliner in the den. Send out a couple of text messages.


4:00 PM--Am totally exhausted and desperately want a nap, but end up having to pee a couple more times before falling asleep around.


4:45 PM--Fall asleep while listening to Jon Kabat-Zinn's meditation CD.


6:10 PM--Alarm goes off. Time to take midodrine. As you can see I'm very 'boxed in' by my medication schedule. Check email and FB for a few minutes on phone or netbook. Pee again.


6:30 PM--Head into kitchen to get ready for dinner with Mom. Take probiotics before dinner. 


6:35 PM--We settle in to eat in the living room, where I sit in a recliner. Mom always provides a healthy, delicious meal for dinner. We update each other on anything and everything.


7:30 PM--Head back into kitchen. Take after dinner meds. Check in with Jeannine via phone or text. Dad calls. 

Double Sunflower

8:10 PM--Am completely exhausted. Take a bath. I always take baths in the evenings because it is too difficult to take a bath when I first wake up. Get ready for bed.


8:45 PM--Was able to do a lot this afternoon, but am now fried this evening. Crawl into bed to watch TV. Tonight I'm watching Dancing With The Stars 'with' my fellow POTSPals, Kristen and Rachel.


9:40 PM--Alarm goes off reminding me to take my fourth and final dose of midodrine for the day.


10:30 PM--Take supplements to help body get ready for sleep. Get up to pee. Make lists, etc. for the next day. This used to be my prime email and FB time each day. Now, I'm trying to push my bedtime back earlier, so I've eliminated computer time before bed.


11:15 PM--Take Ambien. Listen to book on CD or music. Tonight, I'm exhausted, so it's my Rosh Hashanah CD. Asher lays next to me in bed, sleeping soundly while I snuggle and pet him.


12:15 AM--Get up to pee one last time. Turn out lights and hope for sleep. Asher jumps off of the bed and heads to his 'spot' on the floor.


2:15 AM--Still haven't fallen asleep because of so many ANS symptoms. Finally fall asleep.

After the Rain

I take meds a dozen times a day and pee even more times every day. I need a lot of breaks and rest time, even if I'm not able to sleep. Much of my day is spent reclining and my windows of time for sitting up are minimal.


Normally, I also would have checked email and FB too many times to count throughout the day, but I've been working on taking a bit of a break (blog post on that to follow).


The 'good' side of this day was that even though I was feeling lousy, I did get to blog a bit and choose an activity that I really wanted to do. A lot of days are dictated by medical calls and other things that absolutely have to get done. If I choose to go on an outing, I need to save all of my energy for the outing and rest during the other times of the day. In the summer months we try to take a StRoll in the evenings after dinner. Other days are dictated by symptoms that leave me too sick to engage in an activity, and I can't push through my symptoms at all.


And that's what's in a day. At the end of most days I'm left desperately longing to have more ability to engage in the world around me.


Blessings,


Emily

Vacation Status: Booked!

View from the deck of the condo.

We have officially booked a VACATION!!!


AND, I finally have my computer back! :)


After Mom had her staples removed two-weeks post-surgery (and the surgeon felt okay about her lifting, traveling, etc. after the six-week mark), I made the phone calls to book a condo in Chincoteague. We had been looking at possible places to travel and places that might be accessible to my needs. Our number one desire was to be near WATER.


We were able to find a villa that is all one level with water views from most of the rooms. This means that if I am not feeling well enough to go out (or the weather is yucky), I will still be able to feel that I am near nature and water. Our villa is on the first floor, and as you can see from the photo above we are practically IN the water. A little dock extends from the deck out into the water. The condo folks are allowing us to use one of the chaise lounge chairs from the pool area so that I can recline out on the deck if it is nice out.


Right after I booked the villa we heard reports that this season is expected to be a particularly bad one for hurricanes. Hopefully we will not be stuck inside the entire week with rain (or worse, miss our trip!). Good thing we purchased the travel insurance!


This will be my first vacation, and our first together, in many, many years.


We've been putting off vacations as we wait for me to feel better. Finally, during one tearful discussion we decided to find a way to go on vacation regardless of how I am feeling. Through the tears we discussed how we might be able to go on vacation, where we might be able to go, what was most important to us, how it would it be different than what we used to dream of, and whether to go regardless of how I'm feeling. 


The hardest part for me will be accepting my limits in terms of not being able to go on many outings because it feels like 'missing out' on so much beauty in the Chincoteague and Assateague area. I very much hope we will get to see some of the ponies, birds, and beach. I can feel like it is a 'waste' if I am not able to go out and do things and am 'just hanging out at the villa', but I am working on letting go of that! 


We decided on Chincoteague because it is a place with lots of handicap accessibility if I am able to go out (they even have beach wheelchairs to use!), with very low key outings in nature, with a small quiet town and with a villa equipped with all of the amenities we could ever need. I'm very much looking forward to soaking in the big tub! 


As a bonus we will be staying near enough to a friend I met almost 10 years ago in an online support group. We plan to meet her and her daughter and have them for an overnight at the villa! I'm really, really excited to meet Katherine and her daughter, as Katherine has become such a dear friend.


Mom and I are most looking forward to spending quiet time together in a comfortable place surrounded by nature. We hope for outings, but will accept if I am able to do that. I am looking forward to the time away from to-do lists, email and Facebook, but not the time away from Asher or having to pack everything but the kitchen sink!


Blessings,


Emily

Asher Gets Rewarded for all of his Hard Work

Ah-ha! I see there are treats in here.

Got 'em! 

In honor of his 10th birthday, Asher had lots of birthday celebrating to do this summer. We also spoiled him a little extra because he had been doing such a wonderful job and working so hard taking care of Mom after both of her surgeries. We had so much fun celebrating and watching him open presents. Here are a few from his big birthday year. This dog knows how to open a box!

Look at all of my loot! My favorite toys are Kyjen egg babies. I also got squirrels and a hedgehog. Everything SQUEAKS! Yay! 

Enjoying some homemade 'doggie ice cream'. A big hit!

Another box? With stuff in it? Must be for ME!

Gotta get this paper out!

Thank you for helping me by holding the box open Emily!

I LOVE the paper! The present wasn't as exciting. :P It was a new crate!

Happy birthday to our goofy Fuzzface who takes such good care of us and makes us laugh and smile every day. 


Blessings, 


Emily

Happy Birthday Dad!

Dad gets ready to blow out the candles!

Before I sent my computer to the fix-it shop, I was able to upload some photos into Blogger so that I could complete the posts with text later (as my netbook doesn't have access to my photo library). So over the next few days, you will be seeing a few Summer Highlights. I will have to wait until my computer returns for more serious writing!

Ta da! Hope his wish comes true! Now, it's time to EAT this blackberry crisp.

Because it is so hard for me to go out, Mom generously agreed to cook dinner for Dad's birthday. We had a lovely dinner and visit.


Dad spent his birthday as he often does: teaching his first day of classes!

Dad and Daughter.

Happy birthday Dad! I hope this year is wonderful one for you!


Love,
Champ